1. Stigma and Discrimination in Healthcare Settings: Key issues and priorities for action Improving Physical Health Outcomes of those with Severe and Enduring Mental Health Problems Wednesday 4 th March 2015

2. Workshop Aims To explore stigma and discrimination as reported by people with lived experience when accessing healthcare settings To provide an overview of what we already know in this context To discuss potential solutions and actions

3. See Me 2013-16 Scotland Mental Health Anti- Stigma and Discrimination Programme People who experience mental health problems are more able to participate in society and live more fulfilled lives People who experience mental health problems will not limit their own lives and help- seeking behaviour as a result of self-stigma Recovery from mental health problems will be more widely understood and more people will believe recovery is possible Stigma and discrimination will be reduced in communities and organisations with a positive impact on people’s lives

4. See Me 2013-16 – social movement for change focus for action National Programme Media volunteers Re-focussed social marketing Media strategy SMHAFF Communities Programme Lived experience participation & leadership Community champions Local & thematic change networks Grants programme site testing Themes Human Rights Health & Social Care Work & employment Young people

5. Health and social care – Research tells us there is a problem

6. It is a significant issue identified by service users. There is no consistent difference in attitudes or behaviour described in general health versus mental health settings, although there are some differences in the nature and patterns of stigma Stigma is prevalent in health settings Source: Quinn & Gray, 2009

7. Stigma is prevalent in health settings (cont.) Positive and negative attitudes can co- exist in the same individual Even where staff express negative attitudes, there is often a willingness or desire for training and education Source: Quinn & Gray, 2009

8. Health inequalities and diagnostic overshadowing are present in the NHS On average, people with mental illness die 5-10 years younger than the general population People with bipolar disorder have higher levels of physical morbidity and mortality than the general population People with schizophrenia are 3-4 times more likely than general population to develop bowel cancer and have a 52% increased risk of developing breast cancer. The risk of depressed patients with coronary heart disease dying in the 2 years after initial assessment is twice as high as it is for non-depressed patients. (Source: No Health Without Mental Health, Royal College of Psychiatrists and Academy of Medical Royal Colleges, 2009)

9. Diagnostic overshadowing Highlighted as a significant problem in A&E in recent qualitative study (16 yes, 5 unsure, 4 no) “She was discharged and then returned in less than 24 hours… she actually didn’t survive ….the decision was that her behaviour seemed compatible with the pre- existing mental health problem and therefore there was no need to investigate” (Senior A&E Dr) “I think its sometimes a bit of a shame because …. you automatically put them in a box, Ok, the mental illness, um, without sort of like focussing on the physical pain and what they’re actually going in” (A&E nurse) Source: van Nieuwenhuizen et al, 2013

10. Diagnostic overshadowing in A&E – why? Problems obtaining a history Problems with examination due to agitation Environment not appropriate and distressing to patients Clinicians lack of knowledge about mental illness Labelling and stigma (distracted by diagnosis, frequent attenders, drug and alcohol use) Fear of violence, avoidance Time pressure Lack of parallel working with psychiatry “in one case the involvement of a psychiatrist led to the discovery of a physical illness” Source: van Nieuwenhuizen et al, 2013

11. % people identifying as having a mental health problem who experienced a positive response about their recovery from health professionals 66% 2006 65% 2013 73% 2008 (Scottish Social Attitudes Survey, 2014) “The lowest income group were less likely than those in higher income groups to have received a positive message from professionals about their recovery”

12. “No significant reduction in reported discrimination from mental health professionals was found” 34.3% of MH service users surveyed reported discrimination by health care workers in 2008 30.4% of MH service users surveyed reported(not statistically significant) reported discrimination by health care workers in 2011 Time to Change Evaluation Source: Corker et al, 2013

13. Mental healthcare professionals’ behaviour might be more resistant to change because: professional contact selects for people with the most severe course and outcome (the ‘physician’s bias’); contact occurs in the context of an unequal power relationship; prejudice against the client group is one aspect of burnout, which is not uncommon among mental health professionals Why?

14. Implications? “ The danger of this trend is that people with mental health problems might be deterred from seeking professional help” “It would be a terrible irony if people were encouraged by T2C to ask for help – only to find that those providing it held prejudicial views” Dr Claire Henderson, IOP

15. What can we do? “We need to find out why we are not seeing such a level of change among health staff. We want to bring people together to discuss that” Sue Baker, Director, Time to Change

16. Research suggests that we can do something about it… …and also helps us conceptualise what might make a difference

17. Mixed methods The strongest evidence for anti-stigma interventions in health care settings is for workshops, which have an education and positive contact element It is likely that some combination of contact with service users, professional education, “social marketing” to influence attitudes and reform of structural barriers to non- discriminatory practice would be effective Source: Quinn & Gray, 2009

18. Social contact Based on evidence informed assumptions that: where people know someone with mental health problems they will be less stigmatising social contact disconfirms negative attitudes needs to be credible positive and continuous ….so why doesn’t it happen in the mental health service users and professional relationship?

19. Social contact Stigma is a deeply embedded emotional reaction (education not so useful) The nature of contact in health and social care settings may be negative, acute and complex There is a real power imbalance in the relationship (reinforced by a traditionally disempowering system)

20. Formalised peer support (hits all the buttons) Formalised peer support Challenges and level the power imbalance Challenges self-stigma Enhances recovery Challenges direct stigma Challenges structural stigma Changes attitudes and behaviour Sustained and authentic contact Source: Scottish Government, Evaluation of the Delivery for Mental Health Peer Support Pilot, 2009

21. Who is actively challenging stigma? 72% female and 27% male 91% white British or Scottish 89% between 26 and 65 80% employed (8% retired) (50% public, 13% private, 16% voluntary) 68% have had a mental health problem at some point in their life 88% of these had accessed help from services (Source: See Me social movement survey, unpublished 2014)

22. What is their experience of stigma and discrimination? 33% have experienced discrimination as a result of their mh problems 86% have someone close to them who has experienced mh problems 83% have witnessed discrimination towards other people with mh problems 79% have made efforts to improve their own attitudes and/or behaviour (Source: See Me social movement survey, unpublished 2014)

23. What motivates them? Indignant and appalled at behaviour of healthcare staff, those in workplace and those in authority To prevent others experiencing what they have People they know have died or suffered because they couldn’t talk about mental health

24. For discussion……. Do we know enough about stigma and discrimination in health and social care settings in Scotland to act? Whose responsibility is it to make change happen? What are you doing already? What more could be done?